Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Monday, February 14, 2011

The Human Body: Can Disability Be Cool?

When I think of my wheelchair I think one thing: indispensible. I can assure you crawling is not an efficient means of locomotion. I cannot go far on the rare occasion when my wheelchair has a mechanical problem. I firmly believe wheelchairs need to be rugged in the extreme. When I get a wheelchair frame on the day it arrives I drop it out a third story window. If it survives the fall it is good to go. I have high end hubs and wheels. I have top notch upholstery. I change all parts that experience wear and tear on a regular basis. When I travel or go out on an errand I always carry a spare tire, inner tube and pump. I am in fact entirely dependent upon my wheelchair for locomotion. This dependency does not bother me one iota. I am very attached to my wheelchair. I love that it empowers me. It makes my life go. I feel at home in my wheelchair and there is a bond that is hard to describe. I was thinking about this bond as well as how frail the human body is this weekend. I am coming to the end of my journey with my wound. Within a few weeks or at most a month or two I will be up and around. I have found myself thinking that I want to in some way remember this time in my life. One way to remember is to modify your body. In a way I have already done that: I have grown a beard. I look like a paralyzed Santa Claus. My hair has little grey but my beard is white. But I was thinking of something more. Perhaps a tattoo or some other permanent mark. Perhaps some intense experience. I want to do something to remind me of this dark time. And if you think I am exaggerating I suggest you spend six months in bed in your own home.

My thoughts above have me looking through various body art books. I have an intense interest in body art and modification. I am thrilled and appalled at the way tattoos and body art have gone mainstream. I am thrilled because tattoo as an art form, a fine art, is now widely acknowledged. I am appalled because an under ground art form has been transformed and commodified. One can buy tattoo purses, wallets, sheets, lap top covers and Sailor Jerry rum to mention but a few items I have seen. The American Museum of Natural History even had an exhibit many years ago that thrilled me--until I saw the gift shop and how much it cost to enter the exhibit. The rise of body art has caught the attention of many academics. These academics talk about the post modern or post modern physical body. I lecture about this in one of the classes I teach, Body Art and Modification. I always hold this lecture off for the end of the term. It is a hard concept to grasp, the post modern or post physical body. I quickly learned to use popular culture references--the Terminator movies or any other reference to cyborgs. Students get this. They are all over this as it excites their imagination. I refer to prostheses, chips implanted in the brain, hearing aides, glasses, pace makers etc. The technology students get--they get it way better than me. It is an integral part of their life and upbringing. But they fail to see the whole picture--or least struggle with it. What do they struggle with: In the words of Stephen Kuusisto:

The post-physical body is a confluence of material reality and imagination but it is also co-determined by or within politics. The production of material culture is therefore still a matter of 19th century economics. Accordingly the cyborigian person with a disability is a hostage of sorts. We are, it seems, living in the age of the promissory “improved” body—yet that body is still stuck between the territories of production (politics), reproduction (material expense) and imagination (compulsory normativity).

Students, and I would venture to guess the average person, does not get the hostage reference used by Kuusisto. Sure technology is cool. The mix of technology and the human body is even more cool. But that interplay is subject to many other variables. Politics, culture, and economics are major influences. Wheelchair technology, especially power chair technology, is amazing. It can transform a person's life just as my wheelchair has changed mine. But what good is that technology if it is so expensive it cannot be utilized. And wheelchairs, wheelchair cushions, and the bed I am in right now are way past the budget of most people. This does not begin to address the issue of health care coverage of supposedly "complex technology". Worse yet, wheelchairs and associated needed adaptive devices are not seen as empowering by business people and politicians. They are seen as just costly. Socially there is stigma attached to some technology. People do not react positively to a power wheelchair. They are big, bulky, and powerful. People seem to want to leap out of the way or stare. I saw this first hand this weekend--I was able to get out and I was at the Home Depot. A man with his family was shopping. The man used a power chair and it was like watching Moses part the Red Sea. Wherever he went people scattered. This man's wheelchair was empowering to him but to the rest of the world, or those shopping at the Home Depot on Saturday, he was a person to be avoided.

Given the above i am skeptical about the post modern human body. Our acceptance of other bodies is socially based. The technologically to change the human body exists and it may be empowering but that empowerment is socially decided or constructed. To me my wheelchair is cool technology. To others, it is a sign of weakness and infirmity. Are hearing aides the elderly use cool? In a word no and I haste to ad not covered by health insurance. In contrast, cochlear implants are accepted technology and an entire industry now exists to support them. I could go on with multiple other examples but the point i am making should be clear. In only one instance have I seen a mix of technology and disability negate the stigma attached to wheelchair use. This is when I ski--sit skis for some reason are not only accepted but to a degree are socially prestigious. We can see this in the incorporation of mono skiers in the X Games and open acceptance of adaptive skiers at most ski resorts. I wish I could duplicate this elsewhere. In the mean time I am content with my white beard. It seems to have had a good impact on young children. I noticed more smiles from little kids in the few instances when I get out. Of course another interpretation could be is that I am simply getting old and they are smiling at the old guy--and the wheelchair and old age match in their minds. I do not want to think this way and will instead think I am more like Santa Claus.

20 comments:

Just the other day I purchased some new wheelchair wheels, they are definitely pretty cool and very functional. People I talked to couldn't understand why I bought them when the ones I was using are perfectly fine.

I finally found an analogy that I think is quite apt, I told them that it was like them buying a new pair of shoes.

I refrained from telling them that at least my wheels actually have a purpose!

I really enjoyed reading your post and I am so glad you will be up and around soon.

When I was first injured I hated to look at my wheelchair charging in the corner.

Now like you, I really appreciate the independence and mobility! As a big user of assistive technology I realize how empowering technology is for a person with quadriplegia. Have a great day and take care.

Catherine and Carl, Thanks for the kind words. I am not at all sure I am ahead of any curve. I just think more than most as it is part of my every day work. And sadly too many people choose not to think today.Carl, I think your analogy helps people think but does not really get highlight how important a wheelchair is. Perhaps a better analogy would be would you go skiing without skis?Ginger, Sorry you are unhappy with my posts. Healing these last six months has been a roller coaster of emotions. MY entries reflect this. As for content, I have always had eclectic interests. However the theme of all entries is equality for people with disabilities. Surely that is evident. All posts are written by me. I would not consider a guest posting.Greg, I am starting to get out. I will make one to to trips out a week. Wound care is a slow business of healing. Never ever again! By the way, glad to know you are hunting again. I shoot a bow myself though I do not hunt. I shoot at a target and find it very relaxing.

William,A word to the wise.You stated that you are employed.Many a person has had their employment terminated for posts on the internet.Please don't take the chance of being considered emotionally disturbed.

Ginger, Your comment r.e. emotional disturbance is offensive and deeply insulting to me. Anyone reading this blog with an ounce of common sense will come away thinking one thing--I am a fierce advocate for all people with a disability. My employer is well aware of what I write and has never expressed anything but total support. I often use this blog as a spring board for my more academic work. If you consider me emotionally disturbed I suggest you read blogs maintained by people you deem fit. If you want to continue to make comments here I suggest you stick to the content and refrain from personal attacks.

Browsing blogs are interesting at times. Billy, yours really picked up when that Ginger entered. Looks like Ginger is one of the few who is honest with you. But what I'd really like to know is this: Does your bro walk your pooch too????

I'm all excited because I'm thinking about getting solid spox wheels. None of my nondisabled friends get it- at ALL. To them it's just a wheelchair.

I nursed a palm sized open wound for almost a year after two failed skin grafts a few years back. Once I get up the bravery I want to get some sort of tattoo that is visually integrated with the remaining scar. To me, the scar only tells half of the story behind that year of my life.

William,It was wise of you to check with your employer.You do have quite a temper. Hope it doesn't follow you in your work with students.I realize that pain and frustration can carry over in a person's life.Please be careful it does not affect your students.

Ginger, Your comment that made me mad was not the first that I found grossly inappropriate. I am not any happier with your follow up comment. Now not only am I mentally unstable but have a bad or even violent temper. For your edification, it takes a great deal of provoking to make me mad but you have done it. Indeed you are a first and only person on this blog to leave comments I do not like. To reiterate, please comment on the content of what I write rather than make personal observations on a person you have never met. Your comments at this point are not helpful nor do they ad anything to the discussion I want to generate. Arthur, My blog has been around for years. Ginger is a new reader. My blog changed when I got a wound and as result documented what I have been through. Even with this content change the overall focus has remained constant--disability rights. Do you have a comment about the content or disability rights you wish to share?Holden, Have a long discussion with your tattooist and MD about how your skin will react to a tattoo. For instance, as a person with a SCI I would not consider a tattoo below my level of injury. Others do it but I am too wary of problems. I too get excited when I get new wheels or something for my wheelchair. Hope the new wheels work out. I love your blog by the way.

I'm interested the content of your post - the title I think would be better suited for other issues because what I think you're pulling out of the disability mesh is not a matter of being cool. It's a matter of encroaching and threatening viewpoints about the nature of humanity. As evidenced by irrational comments by anonymous profiles (I really don't like those! ... and I agree with Claire.)

This quote from you, I like:"I am thrilled and appalled at the way tattoos and body art have gone mainstream. I am thrilled because tattoo as an art form, a fine art, is now widely acknowledged. I am appalled because an under ground art form has been transformed and commodified."

Body art is beautiful but is losing it's impact by this drowning by the mainstream. I appreciate the acceptance but I don't like this mainstream kind of erasing ... the same applies to disabilities in a way.

As you pointed out:"Given the above i am skeptical about the post modern human body. Our acceptance of other bodies is socially based. The technologically to change the human body exists and it may be empowering but that empowerment is socially decided or constructed."

Just Another Somebody, Thanks for your interesting observations r.e. Disability and embracing it as a political identity is indeed threatening viewpoint. I have always sought to undermine this. Perhaps one way of doing this is to point out and embrace the positive aspects of disability hence my focus on the cool factor. Body art has lost its outsider identity and is going through a crisis in many ways. The analogy between disability and body art is a good one and quite insightful on your part. As we people with a disability become more common place what once held us together, overwhelming disenfranchisment, our unity may be lessened. Food for though for sure. Claire, I have nothing to ad r.e. Ginger.

Thank you for this blog and for your honest blog entries. I stopped reading the responses somewhere around the suggestion that you might be a bad role model. i would like to say, that, as someone who is in college and is just discovering disability theory, disability justice and the idea that i can be considered disabled, I love your blog. I vote "yes" on the whole good role model thing.

Also, in terms of your actual blog post, I know that this isn't what you meant, but I think disability can be cool in the way that the communities that work//have worked/are working towards justice, equality and access for people with disabilities are super cool. There are some amazing ideas and amazing ideas coming from these groups that in my opinions, have a lot to offer both people with disabilities, but also the rest of society. That's pretty darn awesome in my book. (Sorry, I hope that wasn't too off topic.)

Assiya, It is not easy to accept much less advocate from a disability studies and disability rights perspective. The general view is t hat disability os to be avoided, feared or cured. The reality as i have lived and as millions of others have is quite different. I am delighted you are embarking on a deeper understanding of such issues. I am even more delighted you find value in my writing. Thanks for the kind words.

We take so much for granted, especially the view on what the "human body" is like.

Speaking from experience... Contrary to popular belief, the medical profession is still in it's infancy. There are so many things they don't understand and can't explain.

This might sound weird and maybe even offensive (If that's the case please know that it is definately not intended to be). I rather envy people that has the use of a wheel-chair. I am not "hampered" enough to use one, yet, at times, I wish I were as the going can get quite rough. I struggle to see my self as "disabled", yet I know I am not as "able" as most. My family continously try to persuade me to use disabled parking but I just can't seem to get my self to do so. I fear what people would say as they can't visibly see my problems plus I always feel like there is someone else that might have a greater need of it, just to have some dumb-ass able-bodied person to snatch the space...

I once even went as far as to ask a man what kind of disability he has and all he did was shrug and his partner mocked him by saying "laziness"...

Sigma Ki, For me the decision to use a wheelchair was simple--I had no choice. For others the decision to use wheelchair is agonizing and slow. Based on my reading however most people that evolve into wheelchair use wish they had started using it earlier than they did. A wheelchair is an empowering technological advance. We as a culture do not think about this way though. Thanks for your kind words.